Frequently asked questions about lymphoedema

What is lymphoedema? (also known as LE)

The lymphatic system is unable to remove excess fluid due to disrupted lymphatic pathways and muscular inactivity. Excessive fluid in an arm or leg is seen as swelling which can become unusually large and uncomfortable if left untreated. Lymphoedema can affect any part of the body but more common in the arms and legs.

What causes lymphoedema? 

There is secondary lymphoedema caused by an outside influence, i.e. cancer, post-operative or an accident and primary lymphoedema which is hereditary. The actual trigger that causes LE to suddenly start is unknown. A gradual build-up of lymph fluid occurs, and your body will adjust to this accumulation until problems may start to feel like pain, discomfort or tightness of clothing or rings. There are many causes of secondary LE, it is most commonly associated with post-cancer operations due to lymph node removal. HOWEVER, one of the known causes of Lymphoedema is OBESITY and signs and symptoms of severe fluid retention SHOULD NOT be ignored.

NHS Compression Garments

Surely the current treatment for lymphoedema is good enough to stop it, isn`t it?

After your cancer treatment, you are provided with a standard compression garment as shown in the picture. You are told to wear this, and this will help prevent lymphoedema. True, initially wearing this garment may assist in preventing your arm from mild swelling, but it does not address other problems. It does not address the issues of long term post-operative recovery. You need to use your arm naturally after the trauma of an operation because muscles that must pump the lymphatic system need to be reconnected. Wearing the garment without any other form of exercise or treatment means the fluid that accumulates deep in the arm and within the tissues starts to harden and can become painful. Compression garments have their place and are extremely effective, but you also need to keep the muscles pumping the fluid by moving the shoulder and arm.


My friend has never had lymphoedema so I don`t really have to get treatment do I, it won`t make any difference, will it?

Lymphoedema is reversible in stages 0 - 2.  Then it suddenly spontaneously changes and becomes irreversible. There is a lot of empty tissue space between our cells for fluid to accumulate over a long period of time. The earlier you can get Lymphatic Pressure Therapy the quicker and speedier your lymphatic system can start working effectively which offers you a better opportunity of helping to prevent lymphoedema from becoming a problem. It is easier to re-route the trickle of a stream than trying to move an ocean.


I don`t think I will get lymphoedema as I haven`t had many lymph nodes removed?

You may or may not get lymphoedema, but the more immobile and overweight you are will increase the chance of it developing. Unfortunately, LE is an unpredictable consequence of any cancer. We do know that depending on your cancer treatment and metabolic condition you may have up to 35% chance of developing it. Please note that early warning signs like pain, achiness, and heavy arm are there because the body is telling you it is in distress and with any fluid retention it is easier to move in the early stages.

Fibrosis in the hand

When you have lymphoedema why does skin stay indented when you press it in?

Unwanted fluid that stays in-between spaces of the cells and is unable to be removed by the lymphatic system undergoes a transformation. It changes from being soft tissue to tough fibrous cells, meaning strong and protective, usually found around a wound. As most patients are scared to move an injured limb this is how fluid can build-up.

Tissue hardening can be seen on the surface as pitting and felt as firm `Play-Doh` like sensation underneath the skin`s surface. Interestingly though, it ONLY goes through this transformation when it stagnates NOT if is kept moving. 


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